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I Have A Mitochondrial Disease: Update On The Search For A Diagnosis

Thursday 15th November I had a neuromuscular follow up with my fantastic consultant Dr Ros Quinlivan at the National Hospital for Neurology and Neurosurgery. I've been seeing Dr Quinlivan after I was referred to the National Rare Mitochondrial Disease Service,…

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NHS Peer Leadership Academy: Day 6 – The Final Day

And so it is, the final day of the Autumn 2018 cohort of the NHS Peer Leadership Academy. This continues with my series in which you can read previous blogs sharing my PLA journey by clicking the hyperlinked text for…

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NHS Peer Leadership Academy: Day 3 (second residential)

Continuing on with my blog series about the NHS Peer Leadership Academy, here is day three of the Academy. Days one and two took place on 18th and 19th September, and today is day three, tomorrow day four and then…

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Awareness Weeks, Months & Days in September

Well back to blogging but on my new website. I thought I’d do a post about a few awareness days/weeks/months that are current this month or fall this week. Sepsis Awareness Month  First off, September is Sepsis Awareness Month. I’ve…

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#ExpOfCare Week; A Patient Perspective on Professionals’ Attitude, Behaviour, Approach & Compassion & its Effect on Experience Of Care

#Hellomynameis Lucy Watts MBE. I’m a 24 year old young adult with a progressive, life-limiting condition that has caused very complex medical needs. This means I spend a lot of time in the company of healthcare professionals and far too…

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Hope For A Diagnosis: My NMCCC Admission March 2018 for a Muscle Biopsy

This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…

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